Marcella59 Asked December 2011

I am having so much anxiety now that my mother health is failing so quickly. What can I do to help me mental health?

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I am up almost 24/7. Hospice is great, but I am afraid I can not do this on my own for much longer. I promised my mother she could die at home, but my lack of sleep and energy are starting to fail me. Should I feel guilty if I need to put her in a Hospice Hospital? Is anyone else going through this?

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Marcella59 Dec 2011
Thank you Mariesmom for everything you have written. You are a wonderful person!
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mariesmom Dec 2011
We had a 5x a week aide from day one, the nurses came 3x a week, and the social worker 1x a week. I guess it depends on how Hospice 'stages' where the patient is at time they come into the picture. Mom went from being her "normal" self to refusing to walk overnight, then refusing to stand, then to eat, then to drink. It all happened very quickly. 17 days.

It helped me to acknowledge that Mom had lived a long life (outlving all her peers and her husband by decades), and had fought her disease a very long time (almost 6 yrs). Mom did not fear death. She feared dying alone. I moved a chair into her bedroom the last week of her life and seldom left her side, wanting to be present when she took her last breath. I held Mom in my arms when she died.

I had Mom home with me for 2 1/2 yrs. (Mom had dementia/Alzheimer's amd was nearly 90 when she passed). Caring for her was one of the most difficult, stressful things I have ever done.

As you said "There are days I think back only to a year ago and how this woman drove me insane, wandering, poopin and peeing everywhere, be awake 20-22hrs a day, just her constant pacing back and forth and following me around, nagging,complaining and so on". Also the throwing food amd poo, scratching a sore til she was bloody all over (it sometimes looked like a crime scene - Mom would take off all her clothes and wrap a throw around her head), screaming bloody murder in the wee hours of the morning . . .We gave up a great deal to care for Mom. My physical health, my income, monies we spent to enure her comfort, the 'quiet' enjoyment of our home.

Would I do it again? Yes. As hard as it was to live the way we did for as long as we did, and as hard as it was to watch Mom die, we know we did the right thing for Mom - and for us. We are even 'crazy' enough to invite this same care situation into our future - as I have a much older half-sister and brother in law who have no other family. And as we dearly love them both, there is no question that we will care for them. Of course it would be nice if it was more of a "Hallmark" care situation (with no dementia or incontience or irrational anger).
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I think I am more critical about hospice because part of me can't "let go". I am pleased I decided I let Hospice in the picture. Having 24/7 oncall nurses is wonderful. Just this evening, I had a problem with mom and they came right out. No more trips to ER. I would suggest hospice to anyone that qualifies for it. But I know its not for everyone. Letting the dying process ride out is hard to swallow. You want to do so much to help your loved one. And making sure in the process its the right choice. Hospice has great services, But I limited it just to nursing visits 2x's/week unless condition worsens, and 1 aide visit/week to help me wash moms hair. Even with the fact that I can have an aide come and bed bathe mom everyday if I wanted. I just can't let someone else do it. Its my job(thats how I feel). I know I am a pain to them but I even request the same aide and same 2 nurses on a regular basis. I want to respect my mother and not have different people who aren't familiar with her handling her. If that makes sense.

Mariesmom, I do feel for you, I know one day I will relate to what your feeling. There is no preparing for my emotions at that point. I try to think I am preparing but deep down I have no clue. When you life has revolved around someone 24/7 for years, that for me is my "normal" life. I know when that time comes I will be lost in the world. There are days I think back only to a year ago and how this woman drove me insane, wandering, poopin and peeing everywhere, be awake 20-22hrs a day, just her constant pacing back and forth and following me around, nagging,complaining and so on....For me those are funny memories I reflect on these days. Now she just lies there helpless, which inturn I feel lost. It has taken me months now to redo my normal patterns and I still have trouble. So I can't even comprehend the next stage. but I know a higher power has gotten me through tough times and he will still be there to guide me through the next stage in my life too.
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mariesmom Dec 2011
I am sad that anyone has had a negative experience with hospice care. Mine was extraordinary. In fact, my only regret is that I did not call them sooner.

My mom, under hospice care at home the last 3 weeks of her life, was not offered morphine until the last 48 hours, and then a minimum dosage. At this point she had not eaten for more than 2 weeks, had refused liquid for many days, and her urine output had all but stopped.

One can opt out of hospice care at any time and for any reason. And if you again change your mind, you can opt back in.

Keep in mind that If one goes online searching most any medecine, hospital, restuarant, diet aid - most anything - the majority of reviews are going to be negative. We tend to report and share a bad product or service, and yet rarely go out of our way to praise the same when it meets our expectations.

Sleep. I haven't required more han 6-7 hours a night for some time - and in moms last weeks I rarely slept for more than an hour without waking to care for her. I also believed the sleep would return quickly - certainly once the funeral was done - but no. Vivid nightmares at first - even when napping on the couch. Thinking i heard her calling me, thinking it was time for her dinner or her med or something else she needed and waking up in a panic. They say it takes 3 weeks to break a habit. Maybe something as serious as end of life caregiving takes longer. It took a long time for my subconcious to wind down from its state of constant alert.

Its been about 10 weeks now and I am back to my 'normal' pre-Mom-care patterns. I can look at videos of Mom and smile, and talk about her death - and her life - with a sense of peace.
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CallMelshmael:
I know where your coming from about Hospice. My mom gets so anxious at times and of course they encourage Morphine. At times tell me every half hour give a dose. Thank God, my husband is wise in the area of pain medication due to his problems. He gets so frustrated and has vented this to the nurses. They say"morphine won't hurt you" and "its all about comfort". Hubby feels this is there way of justifiying ones demise. I have also worked in the health care industry prior to moms caregiver. So I question alot about there plan of action from my experience. But don't get me wrong Hospice has good intentions and I can't knock that. It just bothers me that if I and my husband didn't know things and believed everything that hospice said would mom still be here. FYI: I have learned that arguing with hospice about Morphine is a no winner. So, if they instruct me to do so, I do the opposite. Unless, I feel it will help with pain. So, I weigh all doses based on my observations. Hey, I am with mom 24/7 I know her the best. I am such the google everything person any concerns I have I go to the internet for that second opinion. I have learned Hospice or not, I took matters into my hands a long time ago. I am moms advocate and still am one till the end. Hospice has now told me that mom most likely is no longer absorbing nutrients from what I feed her. But that hasn't stopped me, I encourage food/fluid all the time. That is for my own satisfication I guess, that I am doing everything for mom. I can't just sit back either and let her starve. That is not comfort in my eyes. I also looked up Hospice Morphine Overdose deaths. That makes for some scary reading. But I got educated real fast.

I promised mom we would be together till the end. And I am trying my damnest to do the best job I can. SLEEP!!! What is that? I have accepted that I need to do what I need to do. When she sleeps than I do. When shes awake I am awake. My body fought this for quite awhile. But I accustomed to it the best I can. Its not easy, but I manage. I know that this won't last forever, unfortuantely. So, why not suck it up and do for her. I have put aside my needs and make her the priority. She would have done the same for me without a second thought. I have anxiety issues about the end. But I take each day as it is and appreciate that fact that mom is still here and I am by her side. In the end no guilt.
Since your mom is on Hospice, you get 5 days respite every recertification period. Hospice paid for. They will make all the arrangements. Call office and speak with staff social worker. I know for me, I am limited in my area where Hospice sends mom for her five day stay. The last place was a bad experience. That place confirms why its best that mom remains at home. So at the end of the week I am taking my 5 day mini-vacation. Mom is going to different SNF for the stay(we will see how it goes this time). This is my time to relax. Sure I feel guily sending her away for them days. But I know that I need it and when she returns I am well rested(sort of) and can resume my duties with a clear head. I suggest you check into this cause everyone needs a break.
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mariesmom,

I was impressed by your comment "...forget sleep - I slept very little the last three weeks of Mom's life and for several weeks after she passed".

That's because I have been sleep-derived for the last 2 years, but especially so in the last couple of weeks. Somehow I thought that now that it's over, I would quickly start catching up on sleep. Instead it has been frustratingly 4 am, 6 am or just waking automatically at the time I used to get up daily to start the caregiving duties. After your comment, I'm more inclined to have patience in easing into my new (I hope) super health phase.
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Marcella:

My 105.5 yo grandmother passed away less than a week ago. I took care of her completely solo for 8 1/2 years. No help from anyone whatsoever.

Now I was just slipping into a "War and Peace" version of what happened to her wrt hospice when I realized that you don't need to know the blow-by-blow account. So I'll spare you that.

But briefly, if the hospice rep had said to me:

"Hey Ishmael, our plan is to bring her in here and immediately hit her with a whopping dose of morphine to combat her "terminal agitation". After that, she'll be so far under that we won't even think about food, water, IV's or anything else. So you can just sit here and watch her starve and dehydrate to death for 6 days with lots of intermittent moaning."

I doubt if I would have replied:

"Go for it."

Now, believe me, I am not planning to turn into an anti-hospice crusader. Far from it. But they need to be up-front about what they do. They claim that they do not hasten death, but they sure did HASTEN my grandmother's. At home ,with an IV drip, she would still be here and I would be fully engaged in my "nutrition nut" / Dr. Frankenstein plan to slowly nurture her back to an ok level of health. It may have ultimately led to the same result, but it would have been my choice.

Not to be a fearmonger, but after my experience I had to google { hospice morphine murder } just to see what the rest of world was thinking.

I think if you visit hospicepatients dot org, you will probably be a lot better informed about the realities of the situation than I was. But to be honest about it, I can't be sure because at this time I don't have the stomach to explore their website beyond page one.

I'm trying to let it all go since it's too late to do anything now. Of course, there may be better sites than that one with lots of discussion from fellow former caregivers.
Im just impressed at a glance with that site because they immediately use the term "Stealth Euthanasia", which is exactly what I was thinking for the whole 6 days.

Well, I'm only writing this because I think that in your 24/7 exhausted state you are extra vulnerable to persuasion and need to be informed so as to not have regrets later. Good luck.
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mariesmom Dec 2011
Marcella - I am so sorry you and your Mom are going through this.

I had the choice of putting Mom in the Hospice Hospital, but after being Moms caregiver for 6 yrs, the last 2 1/2 yrs of this here with me, I was determined to care for her until her last breath, and I was 'lucky' enough to have Mom die in my arms with my daughter at my side. As difficult as it was, it will always be a sacred, precious memory.

But everyone's situation is different. If you are overly-anxious at the thought of Mom dying at home, and/or if your health is declining because of the 24/7 care required (mine certainly did - and forget sleep - I slept very little the last three weeks of Mom's life and for several weeks after she passed), and you have the hopice hospital available - why that is exactly why is it is there!

At the hospice hospital, you can be with Mom as much as you wish and yet allow others to 'take the lead' as primary caregivers. There is no shame in this. There is no reason for guilt. We do our best for our elders - but we must also do right by our selves.

I had both an uncle and a dear friend receive end of life care at a hospice facility and both received extraordinary care. Why not talk to your Hospice about this option? They are available 24/7. Make sure she meets the criteria for going - in my city it was their call - based on how much time they felt was left. If she meets the criteria, go and see the facility and meet the staff so you will can make a truly informed decision.

Hugs to you dear. And to Mom. Its a hard thing going through this.
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Eddie Dec 2011
MARCELLA:

Running on fumes, I had no choice but to leave Dad in the hospital for several months. I took him home when I could see in his eyes the time had come. He caught his last breath as I bathed him. ... His last words were a faint "Thank you."

I always say to myself "I did the best I could with what I had," but even that isn't enough to relieve the lingering guilt and all the "What ifs ...."

No matter what we do, we're often haunted by those vivid Kodak moments of self-doubt that fuel a guilt all the anti-depressants in the world can't hide or get rid of.

You're watching her transition to another plane of existence. As painful as that is, try to find a way not to unravel. Get some rest, reach out to family members, talk to us often.

I'm here. ... Like a bad pain, I'm not going anywhere anytime soon.
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